Jack’s Culture

Jack had an assignment for world studies to write three sentences about his culture. I don’t have to tell you that we are cultureless buffoons. We also don’t have a religious or ethnic or pretty much any other identity that counts as a “culture.”

I offered some suggestions for what he could write about and he settled on autistic culture. (It was either that or “cat-loving culture.”)

We talked a little bit about autistic culture and he started furiously typing. At some point he stopped and said, “That was inspiring, Mom.”

That kid.

Read on for his take on autistic culture (quoted verbatim and with permission):

“I believe that I have an autistic culture because I am autistic. Part of it is that some autistic people like to work together to make an autistic world better and they share their own unique history. They made this culture so that autistic people would feel safe. The most important part is that they feel accepted and awesome no matter what. Written by Jack on 5/14/15 for 5th period world studies.”

Photo of Jack

The Day We Tried To Visit an Artisinal Movie Theater

Today my family had a plan to go see the new Avengers movie. Because even though it was Mother’s Day, sometimes you just have to go with the flow and see the Avengers because a lot of young boys live in your house.

Alex and I were looking at movie times and the one that worked best was at a theater that we had never been to before.

Both of us were like, “Geez, I don’t know. Someplace new? I’m not so sure that’s a good idea.” We had a whole conversation about it.

We fear change.

Eventually we decided that a movie theater, even one we had never been to, should be pretty safe. We were so stupid.

We could NOT handle a new movie theater.

We walked in and I was pretty sure we had mistakenly walked into a hotel lobby. Instantly I said, “I don’t think we’re fancy enough to go to this movie theater.”

We were not.

It turns out that we had wandered into some sort of upscale hipster theater where you buy assigned seats through the internet while you’re still at home and then you come to the theater to buy a $7 bottle of water or a beer and wait for them to bring your popcorn to your recliner.

Team Stimey is not, I repeat, not made up of upscale hipsters.

We were running late, so I left Alex in line to buy tickets while I went to the snack bar to buy popcorn. I ordered a soda and some popcorn and the guy was all, “Are you premium or premium plus?” and I was all, “Da fuck?” Then he started talking about how you ordered in one place if you were premium and the other place if it was premium plus and I was like, “I know my family and I’m pretty damn sure we would not be premium plus,” and it just went downhill from there.

Firstly, if something is the lowest tier, I do not believe that you can call it premium. Secondly, I never really got to discover the difference between the two because Alex came over in a total snit with the news that he had failed to procure tickets because there was some whole system that we knew nothing about and we don’t know how to handle change and NO ONE SHOULD EVER TRY ANYTHING NEW EVER.

Getting a refund for our popcorn turned into a whole thing too, involving a manager and a lot of awkward waiting, and me leaving a guilt tip for the snack bar employee who visibly winced when I told him I no longer wanted to buy the popcorn.

Then we walked back to our car and drove to our regular downscale theater where you can buy tickets from a kiosk and they don’t sell wine at the snack bar and you stick to the floor when you walk on it and instead of fancy chandeliers and mood lighting in the lobby, there are giant coming attractions displays and shooting video games.

Photo of my family from the back. Quinn and Jack are watching Alex and Sam play a video game.

Yeah. That’s about right.

Sometimes I tell Quinn stories about a cat named Oreo and her wacky adventures. In these stories, our friends’ cat Tippy is always very fancy and rich and talks in a snooty accent. My entire family spent some time discussing how Tippy would loooooove the fancy movie theater and we generally made ourselves feel better by mocking both upscale hipsters and a very sweet cat named Tippy.

Photo of Alex, Jack, Sam, and Quinn in a darkened movie theater.

Then we watched the longest movie in the world, also known as The Avengers: Age of Ultron.

Lessons learned today:

1. It may have been Mother’s Day, but it’s always Team Stimey Jr. Day.

2. Team Stimey is not fancy. Or smart. Or able to act fancy or smart.

3. Making fun of other people can bring a family together and make everyone feel better.

4. Never try anything new.

All in all, a day well spent.

Commute Stories

There is an escalator I go down every time I go to work. Today it wasn’t moving. The reason it wasn’t moving was because there was a woman at the bottom with the hem of her dress stuck in the steps.

Great. Now I have something else to be afraid of.

*****

There is a bank I go to in DC where they always offer you a miniature candy bar when you visit the teller. Today, deep in a yearning for snacks on my way home from work, I think I actually said, “Oh thank God” out loud when the guy passed me a mini-Krackel.

*****

In other escalator news, I have to go down and up this escalator every day that I go to work.

Photo from the bottom of three escalators stretching way up into the distance.

It is the longest set of single span escalators in the Western Hemisphere.

If you just stand on the thing, it takes 2 minutes and 45 seconds to travel from top to bottom or vice versa.

It’s kinda my nemesis.

When I started working, I would walk carefully down, gripping the side rail. Now I jog down. I hope when I inevitably take my fall that I am at least near the bottom.

I’m also working on jogging up the thing, although on Thank God for Krackel Days, I just stand on it. Sometimes I’ll read a chapter of a book as it carries me slowly up. My usual routine is to walk up about 2/3 of it, take a long rest, and then finish.

It’s a whole thing.

*****

This isn’t about my commute, but I realized something the other day. It is almost exactly a year since I started working. I realized something else as well. Ever since I’ve started leaving the house to go to work, I haven’t had any long depressed stretches like I’d gotten used to.

Yeah, it’s been harder to fit in some of the things I want to do and I still don’t have perfect mental health and it turns out that people who have jobs actually DO sometimes get a case of the Mondays, but I’ve discovered that purpose and structure are really good for me.

So, hooray for jobs. And even commutes.

Loving the Cheetah Nation

Every year I kinda forget how much Jack loves the Cheetah-thon. Part of it is that he just loves skating without having to wear all of his gear or being asked to do drills. But the thing I am reminded of, year after year, is how much Jack loves his coaches.

Yeah, he spends a lot of his time at the Cheetah-thon literally skating circles around his brothers, but he also makes sure to spend time skating and hanging out with his coaches, often hand-in-hand.

Jack skating holding hands with his coach.This year, Jack headed out on the ice while I was doing other stuff. When I finally got rinkside and spotted Jack, he was in the middle of the ice with three of his coaches doing a little dance.

“It’s really hard to not love that kid,” one of them told me later.

(I agree.)

Photo of Jack after he artfully slid to a stop on one knee on the ice. He has one hand on his hip and the other above his head in a peace sign.Sam and Quinn did less on-ice boogie dancing, but they had fun too.

Photo of Sam and Quinn clinging to the side of the rink. Quinn's back is to the camera.Even Quinn is warming up to his once yearly skating adventure. You might not be able to see it in this photo, but he’s smiling and joyful here.

Photo I took of Quinn from outside the rink. He's trying to duck down to hide from the camera.

I really want to thank all of you who donated to the Cheetah-thon. This truly is an amazing team made up of incredible athletes and supporters. Thank you to Sarah, Kelly, Barbara, and Grandma for donating. If you donated and I missed you, please let me know because I would like to know and be able to thank you. It is really meaningful to my family that you contribute to the Cheetahs in Jack’s honor. I also want to thank Heather and her family for coming to the Cheetah-thon.

Photo of Jack, just after he's skated away from one of his coaches.We’re going to enjoy our summer without early-morning Saturday practices, but come fall, Jack will be back on the ice.

Thank you.

Thank You, Cheetah Extended Family!

Thank you to those of you who donated to Jack’s hockey team, the Montgomery Cheetahs in Jack’s honor.

Jack wearing a black jacket that says "Jackson 42" on it.

Jack says thank you. Or something snarkily charming.

Thank you to Stacy and to Laura and to Heather & family and to Lyda & family and to Nana & Grandpa Richard. We are so very grateful to each of you.

The Cheetah-thon is May 2 from 5-7 pm at Rockville Ice Arena. We’ll be there and we’d love to see any of you there. Jack will be the one wearing shin guards and a huge smile.

There’s still time to donate as well. Put a shout-out to Jack in the comments on the donation site if you do, so I can be sure to thank you!

Every Day Is An Autistic Day

Even though Take Your Son or Daughter to Work Day has been a thing for a long time, I’ve never been able to participate, what with my not having an out-of-the-house job for most of my kids’ lives.

Finally, though, I have the perfect job to take my kids to. All three of them were interested in having me take them to my job at the Autistic Self Advocacy Network for the day, but I knew that it was Jack whom I wanted to take first.

Jack owns being autistic like no one else and I wanted him to be able to see an office full of autistic people working for autistic people. I made sure it was okay with the folks I work with and then I asked Jack if he wanted to go.

He was all in.

So last Thursday we sent Sam and Quinn off to school and Jack and I headed off to work. And I gotta say, commuting is waaaaay more fun when Jack is with me.

Jack staring out the window of a Metro train.

It turns out that there are aaaaaaaall kinds of things to look at from the Metro train window.

Jack riding an escalator up from the Metro. He's looking behind him.

Look at him standing to the right like a proper commuter.

The first thing I do when I arrive in DC is pick up ASAN’s mail. I figured that taking your kid to work day pretty much meant that I could make Jack do all my work for me.

Jack opening a PO box and peeking inside.

He was a natural.

I thought it might be fun for Jack to see Alex in his office, so even though the traffic lights didn’t send us that way, we headed past his building. Jack was delighted.

Photo of Jack on one side of a street. There is a big arrow pointing to a small, shadowing figure in a window across the street. It is Alex.

There was lots of thumbs upping and waving. It was adorbs.

Eventually we made our way to my office where Jack discovered that an office full of autistic people is home to a large number of stim toys. Jack had found his happy place.

Jack playing with an office toy. There is a magnetic base with lots of metal balls stacked on top.

This little magnet toy was one of his favorites. Mine too.

As my coworkers came in, I introduced them to Jack. One of the first things he said to one of them was, “Every day is an autistic day for me.”

“For me too,” they responded.

Yeah. I brought him to the right place. I sure do love both my job and my kid.

The day Jack was in the office was the day a bunch of us were doing #AcceptanceIs and #ILikeBeingAutisticBecause photos for social media. I told Jack that he could do it if he wanted to. He did.

Jack leaning over a conference table. He is writing on a piece of paper. Printed on the paper is: "I Like Being Autistic Because:" Jack is writing "I am unique."

Jack wrote “#ILikeBeingAutisticBecause I am unique.” Did I mention that I love this kid?

Eventually, however, we ran out of things to do that were interesting to an 11-year-old.

Jack playing on an iPad.

Jack was willing to make a sacrifice and goof around on the iPad for long stretches of time.

After work, we walked back via a different route, which opened up a whole new set of things to experience.

Jack standing in front of a wall. There is a thin sheet of water running down it. Jack is touching it with one finger.

Like this water wall.

Jack standing in front of a fountain with streams of water runnin in arcs. Jack has his finger in it.

And this fountain.

Our journey to and from work took longer than it normally does because of said water features as well as jumping on every manhole cover we saw and checking out all the sidewalk grates.

Jack on a DC street. He is stopped and looking down through big panels of street vents.

I wish I could commute with him every day.

It also took a little extra time because we passed a Dunkin’ Donuts and I couldn’t say no to his excitement over a doughnut shop in a different location than our normal doughnut shop!

He chose a double chocolate doughnut. He even shared a little piece with me.

Selfie of me and Jack in DC.

I don’t usually make this expression whilst commuting.

As we were going down the escalator to the Metro, I stopped and looked at Jack. “I feel  like this was a really fun, special day with you,” I said.

“Yeah,” he responded. “I feel like it too.”

I swear I could almost see his brain processing the day. I think it’s going to stick with him for a long time. It was a meaningful day for both of us.

Later on the train, we were talking a little about autism and he said a variation of something I tell my kids all the time: “Mom, I think you’re perfect just the way you are.”

That kid. I feel so lucky to be able to expose him to such positive influences. I feel so lucky to be able to teach him. What’s more, I feel so lucky to be able to learn from him.

I don’t know what he’s going to do with his life, but I know it will be full of pride in himself. And that is enough.

The Cheetah Family

I have been extremely remiss.

The year’s big fundraiser for Jack’s hockey team, the 2015 Cheetah-thon is coming up in two weeks and I haven’t written anything about it. In fact, I don’t know that I’ve written anything about the Cheetahs all year.

That, however, doesn’t mean we don’t still love our Cheetah Nation. ‘Cause we do.

Photo of Jack wearing a black jacket with the Montgomery Cheetahs logo on the back.

Unrelated: Look at his hair. I wish he hadn’t wanted to cut it. Oh, I miss it sooo much.

I’ve been a little checked out from the team this year. It used to always be me who took Jack to practice on Saturdays, but Alex has taken him at least half the time this season. We also didn’t go on the tournament trip for the first time since Jack joined the team. There’s been a lot of Cheetahs hockey without my participation over the past few months.

Jack has had a few really rough practices this year, mostly because he doesn’t always want to do the drills or stay on the ice for the whole practice. (And once because he just flat-out got pissed at another kid and wanted to brawl, hockey-style—that was a hard week.) He gets tired, he says, and it’s cold.

Even so, when I ask Jack if he still wants to be a Cheetah, he always says yes. We’ve talked about some of the things that are hard for him when he’s skating and we’ve been flexible in letting him take a week off here or there when he’s needed it.

Because the thing is, when he’s into it, when he’s happy to be with his team, the magic of special hockey appears.

Photo of Jack and another player in red jerseys skating across the ice.

I stole this photo from the Montgomery Cheetahs Facebook page. I love it.

Photo of Jack sliding to the ice during practice. He's smiling.

Jack often enjoys the drills where the entire point is to fall spectacularly. I love that grin.

Profile of Jack in his hockey helmet.

Taking a break during practice.

Photo of Jack from the back, skating away from the camera.

One thing Jack almost always enjoys is simply skating. It’s second nature to him now.

Jack in full gear on the opposite side of the plexiglass from me. His hands and helmet are pressed up against the glass.

Jack has also been known to ham it up a little during practice.

Jack in a red jersey and his buddy in a blue jersey. They are on the opposite side of the rink, leaning against the side of the rink and looking totally relaxed.

Jack hanging with one of his two best friends, who is also on the team. (Obviously, I suppose.) They’re working hard. Can’t you tell?

Jack is resourceful. He’s always finding things to keep him entertained. There was one practice where I saw him skate over to the rink door and I thought he wanted to get off the ice. By the time I made my way over to see what was up, he was busy entertaining a group of parents by finding ways to ask for their drinks through the plexiglass.

Photo of Jack on the other side of the plexiglass. He's breathed on the glass to make a fog and has written the word "coffee" in it.

I was all, “If you caffeinate that kid, so help me God…”

This is one of the things I really enjoy about Jack. He looooves entertaining people. He is such a goofball.

And every once in a while, he grabs the camera and I get to see parts of the hockey experience from his point of view.

Photo of me sitting on the ground in a locker room. I'm untying his skate.

One day he will be able to tie his own skates and life will be sooooo good.

The Montgomery Cheetahs have given Jack so much.

He’s learned to do something that’s pretty hard and that a lot of kids his age can’t do. He has access to a large disability community. He gets good exercise and learns about teamwork.

More than that though, he is unconditionally accepted. Yes, he is asked to do things and demands are put on him, but if he can’t do it, if the drills or following directions or doing anything other than lying the ice is just not in the cards that day, it’s okay. He isn’t forced to perform. The coaches and I encourage him and try to get him excited, but if the answer is no, the answer is no. And even better, he’s not made to feel bad about it.

For kids like Jack who are pushed so hard so often to do things that are extremely difficult for them, it is nice when they have a place they can chill out and just belong.

This is never more evident than when the Cheetah Nation gets together off of the ice. The team held its yearly party last weekend and, as always, it was a joy to behold. There was food and booze and a DJ. Players of all ages and their parents danced or jumped or ran in circles or shared video games or did whatever made them happy.

Photo of chairs stacked against a wall. Jack is laying across a bunch of them.

Like hanging out on piles of chairs.

That’s what I love about the Cheetahs. No one is pressured to be anyone or anything other than who they are.

With the Cheetahs, Jack is accepted for being exactly who he is.

Photo of Jack in a large room, with tables and people behind him. He has a huge grin on his face.

Anything that makes Jack this happy makes me that happy.

If you are able, please consider donating to the Montgomery Cheetahs on their Cheetah-thon fundraiser page. It takes a lot of money to keep a team like this going. They work really hard to keep player costs to a minimum, so the team depends heavily on funds raised at the Cheetah-thon. If you donate in Jack’s honor, make a note of it during the donation process so I can be sure to thank you.

Whether you can donate or not, thanks for always being so supportive when I talk about Jack and the Cheetahs. It really is a fantastic community. In fact, it is far less of a Cheetah Nation and far more of a Cheetah Family.